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Overcomer

Updated 9mo ago

Coping with Rare Autoimmune Conditions

Hi. How do you cope with rare autoimmune condition and the ups and downs it brings?

Can you help? Connect today

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spookyspoonie

2y

I'm 22 yrs into my rare disease journey and still have no clue most days 😭
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happiness4begginners

2y

This is both reassuring and terrifying LOL to both of you❤️ I feel less alone hearing this but I feel a little hopeless hearing this as well. I was hoping people who had this awhile and been around the block with the doctors who are dismissing a while tried to manage it at home all their different diagnosis would have some sort of mastery you find that you guys are just as clueless and bumpy all the way along makes me feel less Clueless and incapable of managing myself and yet a little sad for my future😥🙏👍 wish the best for both of you. I do my best to take the best care of myself possible. Do as much research as possible. And try to take care of it on my own. As far as I can tell right now I'm not doing a very good job at it
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Scoutie

2y

I've had multiple issues with my health for over 35 years. The best advice I have is to take it 1 day at a time. It is overwhelming, and frustrating at times. Do the best you can. Choose friends who understand when you need to cancel plans, etc... 😥💕
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Overcomer

9mo

Thanks. I am just seeing this, sorry
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Overcomer

2y

Thanks. It sounds like I am not alone
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Overcomer

2y

Helpful suggestions. I feel like I have to start over. New friends, new schedule, new outlook, new way of eating etc. That's a lot
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HeyReese

2y

It is a lot, Overcomer, so don’t do it all at once. I noticed with my friends, it quickly became apart who was understanding and who wasn’t supportive. The friend groups shifted naturally because of this. And I found that it was always a nice surprise when friends were supportive about it. If it’s celiac disease feel free to DM me. I’m still fairly new to the game, but I’m learning!
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Overcomer

2y

Thanks. It is a learning process
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Overcomer

2y

Agrees Corglo. I am learning when I am having low days that turn into weeks to do self care and ask for help. I am learning to go through it and not fight it in order to push forward. It is helpful to hear how others pushing forward too
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Bandits_Mom

2y

👍
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Scoutie

2y

😥

The content in this post is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition.

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